Monday, August 5, 2013

MRI & VNS

I've been noticing an increase in twitter/facebook posts about the Vagus Nerve Stimulator and what side effects it may cause so I thought I would share a little bit about my experience with the device.

I had the VNS implanted in 2010 and since then I've noticed a reduction in the length of my seizures and the recovery time (posticle) but not necessarily in the frequency. I have noticed that I've been conscious for most of my seizures when I could certainly tell you that the strength of the seizure should've caused me to black out... call it an "epileptic instinct".

It's very hard to explain, but when I feel the aura quickly manifest into seizure activity, I can tell you without question whether or not the seizure was strong enough to generalize had I not activated the VNS. Those seizures last a bit longer and are actually painful, like my head is in a vice. Most doctors will tell you that a seizure victim is feeling no pain, but with the VNS keeping me just on the edge of generalization, they do emit pressure and pain. I am a patient and not a doctor so I can only back up these claims with first person experience and this might be different to each individual, but these could be some questions to ask before considering a VNS.

Now to the MRI issue. During my first seizure in 2008, I broke my left scapula and severely injured my right shoulder. Because the left was broken and my seizures were still not under control (whatever that means), I had surgery to repair my left shoulder and the VNS implanted. But, now that my right shoulder injury is in the spotlight, we've hit a bit of a snag... VNS and MRI. There are apparently some more sophisticated MRI machines that can accept a VNS patient but because the VNS is still relatively new, these hospitals aren't willing to take the risk.

My "team" has been working with a couple different hospitals and Cyberonics (VNS manufacturer) to jump some of these hurdles but it has been slow going and mostly on the back burner because my seizures still aren't under control.

The VNS is like a security blanket. With it, I feel like I have a bit of control of my seizures that is more on the physical side and not just on the chemical. Mediation has hurt me almost as much as it has helped; the VNS has its side effects but nothing – nothing like what I've had to go through with the chemistry experiment in my body.